CHRC News

Vol. 4, No. 4, July 2002





Introduction

This issue of the CHRC News features web 
sites in the news, as well as those of special 
interest to medical interpreters.  CHRC 
Project Manager Julie Whelan reports on the 
annual meetings of both the Massachusetts 
Library Association and the Medical Library 
Association.

In the News

New CHRC Rolodex cards are now 
available.  Please feel free to request some 
for your files.  Contact information is on the 
last page.

Treadwell Staff News
Remarks from Julia Whelan
Senior Outreach Librarian, Treadwell 
Library, Massachusetts General Hospital 
617-724-2781; jcwhelan@partners.org

Massachusetts Library Association: The 
CHRC was one of the exhibitors at the 
annual meeting of the Massachusetts Library 
Association (MLA) in Falmouth in early 
May.  The Statewide Legal Reference 
Service (SLRS) librarians were kind enough 
to share their exhibit space as well as offer 
warm hospitality and enthusiastic support. 
For some of the many conference attendees 
who stopped by the shared table, the 
CHRC?s display was an introduction to a 
service they either did not know about, or 
had heard of but never used. For others, it 
was a chance to discuss the service and offer 
suggestions. As the new CHRC manager, I 
am particularly interested in feedback both 
positive and negative, so that we can work to 
improve our service. I learned from several 
visitors that they find the e-mail messages I 
have sent out listing new web resources 
particularly helpful. However, when I 
offered to send out more of these messages, 
the suggestion was greeted with chuckles 
and the comment that the current frequency 
was just about right. I am currently 
arranging our fall workshops so I look 
forward to seeing many of our users during 
these upcoming sessions.

Medical Library Association: The second 
MLA involved a trip to Dallas for the annual 
meeting of the Medical Library Association 
(MLA). This is a forum where the National 
Library of Medicine (NLM) gives its annual 
report and outlines priorities and plans for 
the coming year. NLM continues to 
emphasize consumer health information as a 
top priority. Future programs will 
particularly focus on reaching special 
populations including ethnic groups, 
geographic groups (a project on Arctic 
Health is an example) and developing 
materials in non-English languages. 
Outreach to rural and inner city populations 
continues to be a major goal. 

Consumer Health Topics at MLA: 
Consumer health presentations at MLA 
focused on four main categories: providing 
AIDS/HIV information, providing 
information on genetic testing to consumers, 
outreach to rural populations and 
partnerships between medical and public 
libraries.

Senior Citizens: Recent studies indicate that 
senior citizens are the demographic group 
most frequently looking for health 
information on the web. In response to these 
findings, NLM joined with the National 
Institute on Aging (NIA) and the National 
Institutes on Health (NIH) to produce a 
special resource called NIH Senior Health, 
http://nihseniorhealth.gov/. Research from 
the NIA informed the design of this easy-to-
navigate site and selection of its content, 
including large print and short, easy-to-read 
segments of information.  Material on the 
site is presented in a way that increases the 
likelihood it will be retained in memory.  To 
that end, the first topics offered are 
Alzheimer?s disease, caring for someone 
with Alzheimer?s Disease, and exercise for 
older adults.  For related information, see 
Making Your Web Site Senior Friendly 
elsewhere in this issue.

Genetics Information: Dr. Angela 
Scheuerle, Medical Director of the Texas 
Birth Defects Research Center, described her 
evaluative study of the wide variety of 
information on genetics available to 
consumers. On the web, some professional 
organizations provide in-depth information 
of excellent quality.  However, other web 
sites, primarily hosted by individual doctors, 
are often outdated and in some instances 
give incorrect information. There are several 
excellent print texts, many of them produced 
by advocacy and parent groups. While web 
bulletin boards and chat rooms are often 
positive sources of patient support, they 
should present a balance of positive and 
negative experiences that reflects actual 
treatment outcomes. This study indicated 
that anecdotal information is dominated by 
negative accounts. It appears that patients 
who feel cheated, uninformed or mistreated 
use these forums to vent their frustrations, 
while people who are coping well do not 
seem to be using the media as heavily. 

Both MLA meetings succeeded in providing 
stimulating topics for investigation, contact 
with colleagues, and rejuvenated enthusiasm 
for library work.

Web sites in the News

Healthnet: Connecticut Consumer 
Health Information Network 
http://library.uchc.edu/departm/hnet/rbcu
rrentresearch.html 
This excellent site from the Lyman 
Maynard Stowe Library at the University 
of Connecticut Health Center - 
Farmington has recently added tips to 
help consumers carry out their own 
research on the Internet.  Some of the 
unique features of this site include: how 
to research information on a disease or 
medical condition using selected 
resources, how to locate information on 
health care providers, and how to 
evaluate web sites.

Introduction to Herbal Supplements
http://www.mcp.edu/rc/citpc/herbs/

As part of CHRC Project Manager Julie 
Whelan?s 1999 National Networks of 
Libraries of Medicine (NN/LM) outreach 
grant, she worked with colleagues for two 
years to created web-based education 
programs on complementary medicine. 
Recently made available on the web, this site 
covers a wide range of information about 
herbs in general and detailed information 
about ten major herbal supplements.  The 
site includes a history of herbal supplements 
from a variety of healing traditions, 
instructions on reading a supplement label, a 
partial list of drug interactions, herbs to 
avoid in pregnancy, and annotated links.  

Knowledge Path: Children with Special 
Health Care Needs (NCEMCH) 
http://www.ncemch.org/CSHCN/TOC.htm

The National Center for Education in 
Maternal and Child Health (NCEMCH), 
based at Georgetown University, is funded 
by the U.S. Department of Health and 
Human Service.  It provides national 
leadership to the maternal and child health 
community in program development, 
education, and state-of-the-art knowledge, to 
improve the health and well being of 
children and families. Section One of the 
Knowledge Path contains links to general 
resources including organizations, web 
resources, medical reference books, 
directories, bibliographies, and other print 
publications, as well as tools for identifying 
additional resources.  Section Two focuses 
on practical resources to assist families and 
other caregivers in providing the best care 
for children with special health care needs. 
NCEMCH also includes MCHLine, a 
database containing pamphlets, fact sheets, 
books and journal articles, available at 
http://www.ncemch.org/databases/MCHLine
Search.lasso.  Each record includes an 
abstract, subject heading, and full ordering 
information. Knowledge Paths on related 
topics are available at 
http://www.ncemch.org/RefDes/knowledge_
path.html.

Making Your Web Site Senior Friendly
http://www.nlm.nih.gov/pubs/checklist.pdf

Produced by NIA and NLM, this 15 page 
PDF document focuses on goals to keep in 
mind when developing a site that can easily 
be used by senior citizens. There is also an 
extensive bibliography.  According  ?Wired 
Seniors? a recent report by the Pew Internet 
& American Life Project, 
http://www.pewinternet.org/reports/pdfs/PIP
_Wired_Seniors_Report.pdf, ?Neither 
income level nor educational attainment 
makes much difference in whether or not 
seniors seek out health information.  
However, experience with the Internet does 
make a difference.?  Of those who have had 
three or more years? experience online, 65% 
have searched for medical advice online.

Patient Education Resource Center 
(PERC)
http://www.cancer.med.umich.edu/learn/lear
es.htm

The CHRC is often called upon to answer 
questions about  cancer diagnosis and 
treatment in non-technical language.  This is 
easy enough for general information on 
commonly found tumors, but much more 
difficult for less frequently encountered 
cancer types.  The Spring, 2002 issue of the 
Cancer Librarians Section News 
http://www.selu.com/cancerlib/spring%2020
02%20newsletter.pdf contains an article, 
?Beyond ?Cancer 101?: The Librarian?s 
Challenge? that discusses this problem, and 
describes readable, reliable, but unindexed 
publications.  Some of these publications are 
available full-text on the web. Librarians at 
the Patient Education Resource Center 
(PERC) located at the Comprehensive 
Cancer Center, University of Michigan have 
selectively indexed seventeen newsletters, 
listed in an appendix to ?Beyond ?Cancer 
101? ? and three cancer magazines: Mamm, 
InTouch, and Coping with Cancer. Search 
the PERC catalog by keyword (truncate for 
variant endings with an asterisk), author, and 
subject at 
http://perc.cancer.med.umich.edu/winnebago
/index.asp The PERC catalog does not 
provide links to full-text articles.

TalkingQuality.gov
http://www.talkingquality.gov/default.html

The purpose of TalkingQuality is to offer 
expert advice and suggest approaches to 
dealing with the task of developing and 
distributing health care information that 
consumers can understand and use.  It is 
designed to be a comprehensive guide for 
organizations that are developing reports for 
consumers about health care quality.  Its 
goal is to serve as an educational resource 
for those relatively new to this task, as well 
as a reference for anyone looking for 
information on specific topics related to 
quality reports or examples of different 
approaches to reporting data. The site also 
offers a planning tool to help report 
designers work through all of the steps 
involved in generating an effective report. 
This excellent site is sponsored by several 
government agencies including the Agency 
for Healthcare Research and Quality 
(AHRQ).

MEDICAL INTERPRETERS

Hospital-Based Interpreter Services  
http://www.state.ma.us/dph/omh/interp/inter
preter.htm

This site, from the Massachusetts 
Department of Public Health, includes 
information in PDF format on new 
legislation.  Links include community 
language banks and commercial local 
interpreter services, telephonic interpreter 
services, and links to non-English language 
sites. 

Massachusetts Medical Interpreters 
Association (MMIA)
http://www.diversityrx.org/HTML/MOASS
A.htm

The purpose of this 350+ member 
organization includes defining educational 
requirements and qualifications for medical 
interpreters, establishing professional 
standards of practice and norms of medical 
interpretation, and promoting the 
establishment of professional interpretation 
services and the use of professional 
translation by medical institutions and 
related agencies.   The site also includes 
links to other organizations. 

What a Difference an Interpreter Can 
Make:  Health Care Experiences of 
Uninsured with Limited English 
Proficiency
http://www.accessproject.org/downloads/
c_LEPreportENG.pdf

The findings in this 16 page PDF document, 
published by The Access Project, a 
program of the Center for Community 
Health Research and Action of the Heller 
School for Social Policy and Management at 
Brandeis, indicate that uninsured 
respondents with limited English proficiency 
who have access to an interpreter have 
strikingly better experiences in a wide range 
of areas, including ability to understand 
medication instructions, ability to get 
financial assistance to pay for care, and 
overall satisfaction with their health care 
encounter, compared to those who did not 
have an interpreter.


CHRC Reviews: In Print

The first year -- IBS (irritable bowel 
syndrome) : an essential guide for the 
newly diagnosed / Heather Van Vorous ; 
foreword by David B. Posner /  New York 
/  Marlowe / Distributed by Publishers 
Group West / 2001.  The author, a food 
writer who has suffered from IBS for over 
two decades, offers straightforward advice, 
personal stories, coping strategies, and the 
always sought-after recipes. There are 
chapters on both prescription drugs and 
alternative medicine, and how to eat safely 
when not at home.

The Gale encyclopedia of genetic 
disorders / Stacey L. Blachford, editor / 
Detroit / Gale Group / 2002.  This is an 
impressive two-volume reference source 
covering 400 diseases and conditions of 
genetic origin.  Every entry includes 
definition, description, genetic profile, 
demographics, signs and symptoms, 
diagnosis, treatment, prognosis, and 
resources (references to one or more medical 
books or journal articles, web sites and 
organizations).  There is judicious use of 
color illustrations and pedigree charts.  
There is an index and see references.  It 
should be remembered that less frequently 
encountered genetic diseases are not covered 
in this otherwise excellent source.  Please 
don?t hesitate to contact the CHRC for 
assistance in locating information about 
these rare diseases.

The OASIS guide to Asperger syndrome : 
advice, support, insights, and inspiration / 
Patricia Romanowski Bashe and Barbara 
L. Kirby ; foreword by Tony Attwood / 
New York / Crown Publishers / 2001.  Co-
author Kirby is founder of the Online 
Asperger Syndrome Information and 
Support Web Site (OASIS).  This is a very 
readable, comprehensive book for anyone, 
whether parent, educator, or general reader, 
covering every aspect of Asperger 
Syndrome (AS). There are chapters ranging 
from medication to legal issues, coping 
strategies for parents, friendship skills for 
children, bullying, and developmental 
issues. There is a sample ?letter of 
introduction? for AS children entering a 
school system, also available on the 
extensive OASIS web site, 
http://www.aspergersyndrome.org/ (click on 
?Education?).

Parkinson's disease : a complete guide for 
patients and families / William J. Weiner, 
Lisa M. Shulman, Anthony E. Lang / 
Baltimore  /  Johns Hopkins University Press 
/  2001.  The authors, all physicians and 
experts in the field, state that they have 
?delineated the common problems 
associated with the early, middle and 
advanced stages of Parkinson?s disease? and 
each problem is discussed in detail.  The 
authors offer suggestions on how to better 
live with these problems, and have reviewed 
many of the common non-motor symptoms 
that can occur with Parkinson?s.  There are 
chapters covering drug and surgical 
interventions.  There is also a list of 
frequently asked questions and answers as 
well as an annotated resource list.
 
What would you like to see covered in the 
CHRC News?  Please don?t hesitate to tell 
us!








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CHRC Contact Information

Tel: 1-877-MEDI-REF (1-877-633-4733)
 or    617-726-8600

Fax: 617-726-6784

E-mail:    
    treadwellqanda@partners.org 
or treadwellqanda@partners.org

Consumer Health Reference Center
Treadwell Library 
Bartlett Hall Extension 1 
Massachusetts General Hospital 
Boston, MA 02114. 

http://www.mgh.harvard.edu/library/chrcindex.html

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